[vender]

Hi all, I am new to this site. I have TOS or so the Docs say. Not sure what pain level people are feeling. I find myself in extreme pain all the time. By extreme I mean I would go to the ER if I did not know what was going on. I have a very high tolerance for pain. I have had five spontaneous pneumo thorax's and the pain from that has nothing on this TOS pain. This is crippling, I take Opana for the pain and it is not doing the job. I have been told that the 1st rib removal operation is not the best. What are you all doing? what has helped? I have tried PT five time with no help. I need help, its going on five years and I am done. Can anyone recommend docs in Michigan.
Thanks, hope to hear from you all.
Mark

[Jomar]

Hello and Welcome,

Have they checked for vascular compressions /involvement?
Have they checked for extra cervical ribs? {xray/MRI}

where and what kind of pain do you have?
any - zingers, zaps, tightness, numbness, buzzing , vibrating, swelling, heavy, color changes.. - just a few of the usual terms
If you can describe it & the locations of the worst pain - this might help us come up with the best ideas for you.

Did PT try to strengthen you before working to reduce your pain?
{hand bikes, thera bands, weights???}
a PT thread -
http://neurotalk.psychcentral.com/sh...ad.php?t=33340

It's been awhile since these drs were added to out Drs sticky but these will be a start for you -
Michigan

Gavin I. Awerbuch, M.D. / Neurologist
915 S. Euclid Avenue
Bay City, MI 48706
517-667-5760

Jerome V. Ciullo M.D. / Orthopedic Surgeon
Sports Medicine and Orthopedic Surgery
Sports Medicine Center of Metro Detroit, P.C.
755 W. Big Beaver, Suite 1300
Troy, MI 48084-4903
248-244-8887

Dr. Gerald Zelenock, M.D.
William Beaumont Hospital
3601 W 13 Mile Rd.
Royal Oak, Michigan 48073
Phone: (248)551-1465
Fax: (248)551-3023
Website: http://www.beaumonthospitals.com

Dr Samet / Sarah and crew
Clinic: Preferred Medicine-
Spine, Sports and Occupational Medicine
15636 Southfield Rd
Allen Park, Michigan 48101
Phone: (313)928-0700
Fax: (313)928-0701

Physical Therapy and Pain Management
Dr. Randy Roth, Psychologist and Director of: Pain Management Program University of Michigan Spine Program
(734) 998-6644

Dr. Paul Cullis, M.D.
Michigan Neurology Institute, East
18245 Ten Mile Rd. Suite 130
Roseville, Michigan 48192
Phone: (586)771-7440
Fax: (586)771-9966

Dr. Lance R Chaldecott
Orthopedic Specialists
3200 Biddle Ave
Wyandotte, Michigan 48192
Phone: (734)324-3900
Fax: (734)324-3979

Dr Samet / Sarah and crew
Preferred Medicine- Spine, Sports and Occupational Medicine
15636 Southfield Rd
Allen Park, Michigan 48101
Phone: (313)928-0700
Fax: (313)928-0701

Dr. Lance R Chaldecott
Clinic: Orthopedic Specialists
3200 Biddle Ave
Wyandotte, Michigan 48192
Phone: (734)324-3900
Fax: (734)324-3979

in case you need to look further -
http://neurotalk.psychcentral.com/thread135.html

[vender]

Hello Jo55,
They did xrays, MRI's and a doppler. PT just tried to lessen the pain. I do enough work to strengthen and cause great pain. The pain is in the top of the chest shoulder/back then down the arm to the elbow wrist and hands. It is dull and burning nagging gnawing. I do get tingling but not that often. The elbow pain feels like you hit your funny bone. It hurts to do anything for more than 5 minutes then hands cramp. Pinky and ring finger worse but also have pain in the thumb pad. Shoulder and neck pain are also very bad, by bad I mean a REAL 10. The hands dont work like they used to. I drop everything and have poor control over manipulating them. I do everything from plumbing, electrical, IT work, Certified mechanic, construction...... This is ruining me. I just want it over and the Doc does not seem to excited about the surgery saying "it could make it worse" "only a 65% success". I can not imagine it being any worse. life is just passing me by. I hate it. Sorry for going on but after 4 years I am going nuts from then pain. Which I no does not help the issue.
Thanks

[Jomar]

ahh your description sound so familiar ..
so nothing obvious showed up on your films or tests...?

If not I suggest finding some really good advanced PTs, body workers {Alexander, feldenkrais, hellerworker - any along those lines that work with the whole body to unstick it} or even a expert all around chiropractor. Maybe a team of all or try one type at a time...

I'm just thinking you have some very sticky fascia and maybe some postural and /or alignment issues.

You will need somebody that knows about trigger point, fascia, alignment, muscle spasms. top rib mobilization...


I had the deep burning nagging pain in my neck, shoulders, upper mid back, and the elbow zingers for a short time {my chiropractor did some nice adjustments for those} yes - the hands not working right was a big thing for me.
The constant forearm tightness and weird buzzing/vibrating under the skin was pretty annoying too.
I had minor thumb sx- they tx me for it but it was really the least of my issues...prob cause the doc could actually put a name on it..

non of my docs ever mentioned TOS they were only focused on the multiple RSI injuries - not where they might be really coming from.
Finally had 2 really good PTs that figured it out and by then I had learned some about TOS online too. So from a personal standpoint I was learning what I needed to work on.

I couldn't even stir fry or cook ground beef.
I sure couldn't pick up the small parts at work..could barely drive to work LOL good thing it was a straight shot down a hwy..

that was one of the problems I had with "proving " my injury - i could do large movements and even pick up somewhat heavy things - but no fine or precise finger skills at all..

A really good chiro, adv PT, self care {very important too} and a couple yrs off work has got me back into a functional state.

I still hit the wrong keys while typing {thank Firefox for built in spell check LOL} and handwriting is not pretty at all.
But I can do carpentry, stacked hay, gardened, remodeled, make concrete, shoveled , paint...work on cars = farm gal LOL


If there is any way to swing it - some time off work while you get some focused therapy and give your body time to repair is a good idea..

i tried to work and get PT but it just was a cycle of minor gains and then back to work and lose the progress...

I learned about what muscles are where and how to work them with a tennis ball on the floor or against the wall.
got a good heating pad
got a EMS stim - IF stim is even better but a doc has to sign for those.. next time I'll get the IF type.
those inflatable exercise balls are good for laying over face up and face down to stretch the back and chest


total relaxation and stretching by laying on the floor with arms out to a comfortable place {Sharon Butlers book}
well I've rambled on...

[vender]

Jo the doppler did show TOS and the Adson?? tested positive. I have taken 4 years off to let my body heal. It is only getting worse. Not sure what my next step is.
Thanks for your help
Mark

[Jomar]

I had to refresh my brain on the doppler test - I never have one
Doppler test info-
http://www.google.com/search?hl=en&c...OS&btnG=Search

so you have more of a vascular type of TOS { blood flow compressions}.
Could they tell if it was more artery or vein , or both equally.

Did they note at what angle or degree your pulse stopped at as they moved your arms around? PTs might have done this part.

It's just a good thing to know so if you can keep arms from those positions until the pain can get calmed down.

Do your armpits feel tight or puffy or sore at times , or all the time - that could be pec minor syndrome also a type of TOS.

Also the muscles and fascia can just plain get sticky as well as the problem of blood flow, they all interact with TOS.

[vender]

I believe you are right about the type. I need to get the report to find out more. My vascular doc told me that about 20% of the population has these type of results. But he does that test when the doc finds your pulse then has you look away, my pulse goes away completly.

The pain is in the front of my armpit. They feel like you said all the time.

So what can I do? I take Opana 40mg ER and Opana 20mg and still they do not touch the pain.

What kind of pain levels are people seeing with this TOS? I am losing my mind from the pain and am getting sick of TV!!!

My doc does not seem to thrilled with the 1st rib removal. And one of the side effects is a collapsed lung (I have had 5 collapsed lungs). I am not thrilled with that. Anyway thanks I will get the doppler reports.

[gibbrn]

hi I feel your pain!!
I am in Canada so taking different drugs but similar action...oxycontin 20mg three times a day and then percocet in betwen times I feel I need more pain relief.

I have taken many drugs over my 6.5yr strugle with my pain and I was injured on the job..RN, lifted a patient up wrecked back, neck, shoulder...welcome to TOS. I had total vascular occlusion and in a case like this you need to get a DAMN good vasc surgeon who has done a number of these surgeries so you can know you're in good hands...okay back to meds.....I take a nerve pain medication called neurontin.
http://www.healthcentral.com/chronic...-25293-25.html
link to info on it.
I also can't live without my diazepam or vallium. It is the most effective muscle relaxant on the market. It is quite sedating in the beginning but that goes away pretty quickly..or did for me.
http://www.webmd.com/drugs/drug-6306...=Diazepam+Oral

diazepam is big guns but I find if you are in as much pain as you are in and your muscle must be like rocks...we all are believe me!! Flexeril is another muscle elaxant you can take
http://www.webmd.com/back-pain/muscl...-low-back-pain
this link give you a few of the muscle relaxants you can try.

Another thing to consider to help with chronic pain as this is what you have...is to take an antidepressant as it helps to decrease the signals of nerve pain and works well to help you sleep as well. I take nortriptyline as it has less side effects of amytryptyiline and less is more in the drug world!!!!
http://www.webmd.com/drugs/drug-1071...riptyline+Oral

The other AMAZING muscle relaxant that I take is one that patients with Multiple Sclerosis take to help prevent their spasms as they have little to no control of muscles at times...however it is extremely sedating and while I was getting used to it I was like a drung sailor....I would fall asleep at my laptop sitting up drooling all over myself....not a pretty sight I can assure you I take 4mg four times a day and an extra 2mg at bedtime so 6mg at 12am dose to help with sleep comfort.

I would recommend if you were to start this type of med that you take 1mg every 8hours till you see how you react to it then go on from there your doctor should help to guide you and I am surprised you are not getting better medications for your pain to help with it....it is so crippling in your daily life!!! It is nice to get out of the house once in a while!!
http://www.medbroadcast.com/drug_inf...d_name_id=1322

Some of this HAS to help I hope and pray it does. There is a lot of information here sometimes it just means a good search in past posts.

I hope you can use some of what I have written here for you and your pain can be eased a little. I have had the rib removed and was TOTALLY PAIN FREE for 6 months till physio ruined what had been done by the surgeon by having me do all the wrong exercises....so now back to same pain if not more than before the surgery. Good communication with my partner Marc really helps. I rely on him a lot for groceries and we have a cleaning lady come to the house.....things to make life easier if you can do it.

take care and hope you get some relief!!! feel free to pm me if you'd like to chat some more on meds or just for support!!! WE GET IT!!!!!!!!!!! You are NOT alone!!!!! sorry to welcome you but we are here for each other always!!

love and hugs,
Victoria

[tshadow]

All I can say is that I have been fighting this for 6 1/2 years.

I was an attorney and Pro Tem judge. I have done a ton of research to try to help myself enough to get back to work.

I have been seen by perhaps 35 doctors.

Except for some relief after Dr. Annest of Denver's surgery, basically I have gotten worse and worse, the pain higher and I am bed-ridden.

THe WORST pain was the RSD and that is in remission, almost immediately with the surgery. That is an UNUSUAL outcome, but also, the headaches, and the swelling head feeling went away completely.

Keep up hope. Keep trying different meds. Search out our docs, if you can.

God bless you.

[(Broken Wings)]

Oh so DITTO...

...and I now know I have pec minor syndrome from the info on this forum. Knowledge and understanding is your best defense. It helps so much when I understand why.

Jo has given you great advice. Just take some time and read our threads. You may find something to help you start your journey back. There are many things you can do to help yourself.

I'm doing so much better I don't want to complain. It's taken a long time and a mirad of things. I never gave up. I won't give in. I don't regress gracefully. But yes you will have to stop doing things that irritates you the most. When you say "I can't do..." are you still doing it? Those are the things you should not do at all for a while.

The infrared and LED lights are a miracle for me. Been using those on and off for about 2 years now, first in PT and now I have my own units to use. Now, I'm driving without pillows for arm supports. WOW !!! Still don't go far but can do two cities in one day without a major setback.

Keep in touch and let us know how you're progressing.

I believe it can get better. I also believe it can get worse. My prayers are with you and all TOSers.

...would it be appropriate to say "PECers"....???? TOSers and PECers LOL!!!!!!!!!!!